The decision not to reveal the death of the patient was criticised by some as creating an over-optimistic narrative of a patient on an upward trajectory.
Photograph: Getty Images/Science Photo Library RF

French scientists have been criticised for concealing the death of the patient at the centre of a breakthrough in which consciousness was restored to a man in a persistent vegetative state.

The treatment was hailed as a major advance in the field and suggested that the outlook for these patients and their families might be less bleak than was previously thought.

However, it has emerged that the scientists behind the research withheld the fact that the man, who remains anonymous, died a few months after receiving the therapy. The team justified the decision, citing the family’s wish to keep the death private and a concern that people might have wrongly linked the therapy, which involved nerve stimulation, to the 35-year-old’s death from a lung infection.

However, others said the decision had created an over-optimistic narrative of a patient on an upward trajectory.

Damian Cruse, a cognitive neuroscientist at the University of Birmingham, said: “I do worry that the media coverage of the study gave a more hopeful message to other families in this situation than the message that perhaps would have been delivered with all of the facts … If we protect patient anonymity, then there’s no reason not to be able to tell the full story.”

When the paper came out last month, Angela Sirigu, who led the work at the Institut des Sciences Cognitives Marc Jeannerod in Lyon, France, told the Guardian: “He is still paralysed, he cannot talk, but he can respond. Now he is more aware.”

Of the decision not to report the death, Sirigu told the Guardian: “The patient’s death was not linked to our protocol. He entered in our study in January 2016 and his participation ended [at the] beginning of September 2016. We respected the family decision to not communicate about the event. What was important for us was to keep the event in the privacy of this wonderful family.”

Prof Jacques Luauté of the University of Lyon, who had followed the patient for several years, told Le Monde: “We discussed it with the family. Together, we thought, wrongly, that it would lead to people linking the stimulation and the death. We concluded that the death, which wasn’t linked to the study, was a private family event. This was a mistake, because it was obvious that we’d be asked what became of the patient.”